Truly Inspiring: Ethan’s Story

It was February 14, 2011, my sister’s 16th birthday, when the chaplain walked into my room and asked if he could help us through our new diagnosis. It was a complete surprise to both me and my dad because we have not yet talked to a doctor. My dad then promptly responded saying, “what diagnosis, we haven’t talked to a doctor yet.” The chaplain quickly retreated from our room, claiming he had visited the wrong one. I immediately turned to my dad and said, “That’s not good.” About an hour after the chaplain left the room, Dr. Peterson, the oncologist that was on call that day, came in to my room. He explained that the CAT scan they had taken earlier that evening, showed a malignant tumor. I felt my heart instantly sink deep into my stomach, knowing that that meant an extended stay at the hospital on my sister’s birthday.

My sister had previously brought attention to a small knot that had formed on my right temple. I just assumed that it was another benign osteocondroma that had formed due to previous treatment from my first form of cancer, Stage IV Neuroblastoma. We decided to call the Egleston Hospital, because it was where I had previously been treated for cancer. Based on my medical history and the fact that I had no insurance, the hospital advised me to go straight to the emergency room.

After spending my first night at the hospital, I was greeted with what seemed to be every oncologist at the hospital. After a short introduction from the group of doctors they explained to me that a biopsy was necessary in order to reach a diagnosis. After a couple of days there was finally an opening in one of the operating rooms. As I entered the operating room it was just as cold and bright as I remembered from recent surgeries. Shortly after laying down on the operating table, I woke up in my hospital room, almost completely unaware of the fact that my biopsy occurred. I looked at the clock to realize that four hours had passed in what seemed like only seconds. As night approached my skin began to itch all over, making it impossible to sleep. I waited until I could not stand it anymore and pushed the dreaded nurse button. It turned out I was having an allergic reaction to the codeine they had given me.

By this point all I could think about was going home. After a horrible night’s sleep, it was explained to me that under a microscope the cells from the biopsy appear to be Neuroblastoma cells. It was the last thing I wanted to hear, having battled it once before. I decided to look on the bright side and thought at least I know what I am up against. Shortly after I was released from the hospital we finally headed home, concluding our week-long visit.

Days passed like months as I waited for a call from the hospital that would confirm the results of the biopsy. A full week passed, when out of the blue, I received a call from a Neurosurgeon’s office at Scottish Rite. They wanted to set up an appointment and CAT scan immediately. I was very confused, but I went to the appointment anyway. At the appointment I discovered, to my relief, it was an A-Typical Meningoma and that I would not need chemotherapy. However I would need to undergo a craniotomy in order to remove the tumor, and I also would have radiation therapy once again. Because of the location and the rate at which the tumor was reproducing, the craniotomy was set for March 8, 2011.

After a successful hunting trip with my brother, I was ready for another surgery. The morning of the craniotomy I was quite confident all would go well, even though I knew very little about my surgeons and my tumor. The craniotomy went just as I expected, flawlessly. Much to my surprise the day after I was able to walk, however, I could not see out of my right eye from the swelling. Before I knew it I was heading home with my birthday just around the corner.

As the days passed I was slowly being weaned off my medications which resulted in my biggest fear coming true on my birthday. The medications I was being taken off of sent me into a manic state that ultimately resulted in another extended stay in the hospital. After three weeks I was finally stabilized on new medications and was able to go home.

The next step of my treatment was radiation. Ironically it was the same thing that was believed to have caused the brain tumor. I received two months of radiation, five days a week, at maximum levels on the right side of my head. I received such an intense radiation treatment because the tumor was so large, almost 7 ½ centimeters. After a month of radiation I felt no side effects and thought treatment from then on was all downhill. It was the second month of radiation I felt the first wave of side effects that come along with radiation. The skin on the side of my face got dry, crusty, and blistered. I later became so tired I was sleeping twenty hours a day. Wondering what was going on, I asked my doctor. She responded, “Radiation is the gift that keeps on giving.” The final side effects of my radiation were loss of hair and blurred vision in my right eye.

It has been over a year now and I am on my way to a complete recovery. All signs of the brain tumor are gone and I have been completely taken off of all medications. My vision is still blurred in my right eye because my tear ducts were blocked during my surgery and radiation. My tear ducts will have to be cleared through another surgery in order for my vision to be restored. Almost all my hair has grown back now and my only follow-up plan is a MRI and labs every three months.

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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